Max was born in October 2008 at Georgetown University Hospital. After more than four months at GUH, Max moved to the HSC Pediatric Center in March 2009. He came home six months after he was born, in April 2009.

Tuesday, December 16, 2008

Evening update (Tuesday 12/16)

Carolyn and I just missed each other by minutes at the NICU today thanks to the freezing rain. I got there around 6:00 PM (Dr. M.: "I've always wondered what you keep in that backpack of yours Mr Lehnert!", Me: "That's between me and the New World Order"). I found Max just finishing one of his new-fangled 30 minute feeds. Cj had told me earlier that Max seemed to be tolerating his new compressed feeding schedule, even if the speech therapy hadn't gone so well.

Carolyn had told me also that she had gotten to see Max without his feeding tube. (They are replaced once per week.) She got to see Max without any obvious lines--quite a privilege. He's starting to look like a real baby to me, even with a feeding tube in. She left before they put in the new one and I arrived after it had gone in.

Nurse J. and I chatted about Max; she told me that he had a fairly major desat/brady when she'd put in the new feeding tube. I think it was probably a pretty tense situation, although he was resting comfortably when I arrived. Then I got to hold him while he was finishing up his feed. However, Max's measured oxygen saturation fell fairly steeply and wouldn't come up. I put Max back in his crib and Nurse J. suctioned out some thick mucus he'd coughed up. She also gave him supplemental oxygen. I would say that for half an hour, or perhaps more, Max's sats were extremely volatile and prone to sudden plunges.

The doctors asked the nurses to measure his head circumference. Still 35.5 cm (unchanged from last night)! And later I heard that the fontanel still felt good. The nurses, with a doctor looking on, used supplemental oxygen and various positioning tricks (on his stomach, on his back with neck support etc) as Max gradually got his breathing and saturation under control.

With these sorts of events I always have two questions: (1) If his heart is beating away and he's breathing quickly and deeply, how could oxygen not get to his blood stream? The mechanical answer (obvious in hindsight) is that the efficiency of oxygen transfer in his lungs must be impaired. But this opens a further host of questions, none of which I care to speculate on tonight. (2) How much damage do Max's organs, particularly his brain, suffer during these episodes? What's acceptable? I can say that the NICU team responded to this with alacrity, which worries me, but then they didn't respond with the big guns, which reassures me--they used the "blow by" which just puffs oxygen in the baby's face. No nasal canula, no face mask. I asked Nurse J. about this and it took her a while to fumble up the approved NICU answer ("Most babies in this room go through this and they do just fine"). Along the way, I got something that sounded closer to the truth. They don't know how much damage it does. They don't think it's a lot, but it's something they want to avoid.

So Max had three pretty severe episodes today: one associated with his attempt to eat, one when he has his new feeding tube inserted, and one at the end of his 5:30 PM feeding. It was a little exciting when I was there, but I didn't see Max's heart rate drop. If anything, he was a little tachycardic. Dr B. claimed responsibility for the last of the three because of her decision to go to a compressed feeding schedule and said that Max wasn't quite ready for it. She ordered that his feeds be lengthened to an hour to give him time to rest and recover. Nurse J. suggested hitting Max with another Lasix dose. Apparently, oedema can be associated with respiratory distress. (As a chronic sufferer of HAPE in my younger days, I don't know why I'm so surprised.) Dr B. responded that she wanted to only change one variable at a time. Like all of a sudden we're using the scientific method to treat patients?

Carolyn and I are turning back into managers again, after a few weeks of being parents. Oh well. Carolyn phoned Dr. B. to make sure that Max would get plenty of attention tonight. Dr. B. had rejiggered the staffing schedule so that Max would get "maximal attention" tonight. Dr. B. also said that Max was doing much better than when I saw him. They're considering whether to hit Max with more caffeine to help control his oedema. Maybe my theory of coffee withdrawal wasn't so crackpot after all?